r/tetheredcord

I’m scheduled to get surgery in September with dr. Klinge and do not respond to opioids so toradol and the initial anesthesia are all I will have for pain relief. Anyone else done the surgery without opioids and have any tips or experience they’re willing to share?

My housemate is having surgery for tethered cord in a month and I'm planning to offer to switch beds during her recovery because it's adjustable (the head comes up to sitting)

How long can I expect her to need it? I know she can't bend at all for a while but after that I assume it will be helpful for getting in and out of bed. I wanna know before I plan to part with my bed lol

Hi all,

I was recently released by Dr. Klinge a month or so ago, I thought I would share my experience for others.

Daignosing and Referral process:

I was dx'd with hEDS, and my local hEDS PCP became suspicious of possible hEDS related structural issues like TC/MALS/CCI/Nutcracker. They referred me to local Neurosurgery for work up, and when that led to nothing my PCP escalated to Dr. Klinge at Brown University

Screening and Pre-Surgical testing:

The initial intake took a while to get scheduled. I think it was about 6-8 weeks to hear back from the clinic after referral, and the consults were booked about 3 months out. Honestly this wasn't very bad considering how backed up specialists are everywhere. This initial appointment MUST be in person.

I've seen some people confused or upset that the clinic requires this to be in person but it is absolutely necessary.

I was screened by Dr. Suillivan in clinic. The clinic was very thorough, much more thorough than my local NS. Dr. Suillivan did a number of daignostic exams like Babinski reflex that would be impossible to do over telehealth.

Based on the exam and surveys, Dr. Suillivan ordered more testing for TC one Urodynamic Study and EMG and transferred me to Dr. Klinge.

I met with Dr. Klinge over telehealth a month later after I had gotten all the testing done, and she offered surgery. The turn around time for surgery is actually pretty fast, I only waited about 6 weeks for mine.

Travelling and Surgery:

I stayed at Homewood Suites in Providence, they gave a very substantial discount for Dr Klinge patients. Ask for Amanda. With the discount + the room's kitchenette it was cheaper than Airbnb or most other hotels and having to eat out every night.

Surgery day was a bit of a blur. The entire team is excellent, they are very knowledgeable of common TC comorbities like MCAS, Dysautonomia, hEDS, etc. The Anesthesiologist Dr. Gasper was especially knowledgeable . Dr Klinge herself was very sweet and knew a lot, obviously.

You'll only be in the OR for a few minutes before being knocked out by Anathesia.

Post- OP:

I'm sure this is the part people are most curious about. I will be honest, I did very well with this surgery and had immediate and significant benefit, so I am probably more of a Best-Case scenario rather than a Worst Case.

You will be handled by the Anathesia recovery team in the PACU. You might not remember any of this because you'll still be on the opioids and Anathesia. I had 0 pain for the 6 hours post op, but I did hear other people in the room struggling with pain.

You'll be brought to one of the hospital wings for the rest of your recovery. You will need to lay flat for at least 24 hours. You can be on your side but I found it be a bit hard to roll because all of your leg and back muscles are confused and don't fire in sync making movement challenging. I could not move my legs or torso for the day, then things quickly came back online.

This was probably the most painful part. You'll be laying right on your incision. The staff will keep you loaded up with oxycodone and torodal and muscle relaxers, which removed most to all of my surgery pain. Most of my pain came from the muscle spasms around the surgery site and across the back and legs as you move or shift in bed. I would put it at about a 7 or 8 at it's worst, not fun but not intolerably horrible by any means. Mediation and progressive muscle relaxation was super helpful in bringing the spasm pain back to like a 2 or 3. The hospital does provide additional breakthrough pain medication, so if you are really struggling with this part there are options to get it better under control. The surgical pain was sometimes annoying but honestly my least favorite was the Foley catheter, it was fine at first but really started to become irritating after 20 hours. Overall I'd give it a 3 or 4/10 difficulty, with the medications it was usually very tolerable, I think my average TC flare up was much worse than the worst part of Post-OP.

After 24 hours the staff will try to get you upright. You may have a spinal headache from the small amount of CFS loss during operation. Compared to the spinal headache from a lumbar puncture it was really nothing.

If you can tolerate being upright for 30 minutes the staff will have you try walking to the bathroom to urinate. And they might try to have you walk around a bit. Again, I was an outlier here, I was walking up and down the hall for fun after 24hrs and I am told that this is not very common so early into recovery.

You will probably get spasms and soreness in weird areas all over your torso and lower body after moving in bed or walking. Just remember to treat and not push it too much. For me it wasn't too bad, maybe a 6 or 7 pain at most.

If you are walking, voiding, have manageable pain, and have signs that the bowels are working (farting, cramping, BM, etc), the Hospital will start considering you for discharge. You will be limited on the # of Opioids you can be sent home with; I didn't really need them at all after 24hrs but if your pain is harder to manage you might need to discuss alternatives like gabapentin to add.

The hospital food is actually pretty good, the staff is mostly good as well.

After discharge you'll want to rest and relax while you wait to do your follow up with Dr. Klinge. I found that it helps to push yourself a little bit to walk, it just seems to desensitize some of the spasms and other pains you'll be facing. You'll want to start slow with the walking, I did 15 minutes of walking the day I was discharged and it really made my Dysautonomia go nuts afterwards. You will be largely in bed rest, which for me I could enjoy with very little pain.

The hardest thing for me after discharge was using the bathroom and the GI cramping from everything learning how to function again. You'll be on a lot of laxatives so you may be using bathroom often. I think it took about 10 days Post Op for the GI cramping to stop. I was pretty used to GI cramping because it was one of my TC symptoms pre-op, so I wasn't disturbed by it; if you haven't had GI cramping before it can be pretty intense. Pain medications, warming pad on the abdomen, staying very will hydrated so things move quickly all help.

I would say the post Discharge recovery was about a 2 or 3/10 difficulty overall, with brief periods where it was more painful from the cramping. Again, I tolerated the surgery very well so I might be closer to a best case.

By the 10 day check up with the clinic I was off all of the pain medications and could be upright and moving for most of the day. From there it has been just a gradual reintroduction of normal light activities, Dr. Klinge's team will give you instructions and restrictions for this based on your case.

For reference, by day 11 post op I was ok to be in a car and walking with a walker for 6-8 hours without any pain medications. The biggest limiting factor for me was the Dysautonomia and fatigue.

I'm all, I found the surgery to be very tolerable and had a lot of immediate benefits. I hope your future surgeries go as smoothly as mine did!

anyone have a emg and have it be normal?

I got diagnosed with OTCS a week ago and will be having surgery. Curious what to bring to the hospital and tips regarding after surgery like clothing (what should I even wear), toileting, bathing, and any other practical day to day stuff. Tbh, a long list would be great but any info is helpful

edit: my post op apt told me to take more pain meds and to walk less haha
I’m very curious about the meds / activities people were doing a week out from surgery. I got my filum removed with a laminectomy for reference about 10 days ago. I haven’t taken anything besides ibu and tylenol (like I usually do anyways) since around day 5 and I’m doing most of my normal activities and I’m not sure if that’s normal or not. The pain feels like the pain I have daily anyways just more localized. I’m not lifting things or bending down all the way because I don’t want to harm my healing process.
Thank you!
Sorry for poor typing I’m falling asleep right now haha

I feel so vindicated. I had what me and my surgeon thought was occult tethered cord (not visible at all on mri). He said that usually you will not know if you had it until after the cord is cut. He cut mine and said he knew instantly it was tethered, thickened/inflamed/fatty/asymmetric. When in doubt just cut I guess. Years and years of weird symptoms, though we will see what gets better